Welcome

This blog is about a new walk with my husband Rick & I since he was diagnosed with ALS (Amyotrophic Lateral Sclerosis) or Lou Gehrig's Disease or MND (Motor Neuron Disease) on February 1, 2008.

This blog was started as a way to keep our family and friends and anyone else interested in our battle with ALS updated.
So as you read this blog please keep us in your hearts and prayers.

The blog starts from the most current to the oldest entry. Rick has started to blog now also as of April 1,2008 so this site has become officially "our blog".

My dearest husband Rick passed away on August 13, 2010,
2 1/2 yrs after diagnosis. Now I have to learn how to walk in the courage, strength and bravery that he did in fighting this disease. He promised me he would be waiting for me in eternity on a park bench. Together Forever!

Saturday, January 1, 2011

Joan here..."My first New Years Eve without Rick"


Last year I posted on December 31 some pics of all our family members who shared the same birthday on today's date. My mom, Rick's dad, my sister, my cousin, Well.....that list just grew longer. Rick's daughter Ella had a little daughter today. Rick's dad Wendal now shares his birthday with his great grand daughter "Nina". Rick would get such a kick out of that happening. I think it is wonderful news and an incredible thing to happen on the last day of what has been a very difficult year for everyone.

I spent the evening just doing nothing much. I was invited to spend the evening with Rick's dear cousins but it was so cold to drive out there and I have so much on my plate right now so I declined. I made a big toasty warm fire in the wood stove. It is so very comforting on a cold, cold evening to have a nice fire burning in the wood stove. I kissed Rick's picture countless times and wiped away the tears with each kiss. Thankfully, his picture in under glass.

I sat here feeling blue as the clock was ticking away and getting closer to moving forward into the new year. I was dreading the arrival of the new year as it meant it would mark the first new year without Rick physically here. He and I would not ever share one day together in 2011. I was spiralling downward with these thoughts as the clock ticked away. All of a sudden a skype call came in from our friends Erin & Bill from New Zealand wishing me a New Year!

I am so amazed how once again God uses people to be there at the right time and the right place. It brought such joy to my heart and cut through my sadness. In thinking about these friends I have been truly amazed. ALS has invaded Bill's body for sometime now. My heart breaks for them knowing what they are going through. How hard it is for both of them in each their own ways. Through the wonderful world of Internet we connected because of ALS. Through these past years we have shared our lives as we went along. Rick and I enjoyed reading their blog together. They were people just like us...people put in a spot that they didn't want to be in. Facing the tiger in the eye and desperately trying to over power it.
We don't always understand the whys or the how comes when having to deal with sorrow and pain but I have come to experience first hand how amidst all of it there is always a thread of goodness. That thread is what I have clung to. We just have to be open to look for it and that is not always easy when you are walking through the storm.

Tonight, when I got the "Happy New Year call" it was such a gift at the right moment. Here they are living on the opposite ends of the earth, right now experiencing hot beach weather, and already moving towards the end of New Years Day and I am experiencing -30 some with wind chill, piles of snow outside, putting wood in the stove, and heading into the New Year. As opposite as we are in so many areas we share in the same grief and pain of what ALS does to our lives, loved ones and families.

The friendship that we have developed with so many others in this situation has been gold! We may get knocked down and the wind knocked out of us from time to time but we share in the same inner strength and power that love gives. Because of our faith and the love for our loved ones we brush ourselves off and get up and keep on walking!

Erin, Alaina, Cathy, Alice, Joan M., Karen, Anna, and Mertia and everyone else who walked the walk of love and never gave up through this very difficult past year...May you each find an extra thick thread of goodness when you need it in this New Year of 2011!

Saturday, December 25, 2010

Joan here..."Rick's First Christmas in Heaven"

This picture was taken by me last year on Dec. 24, 2009. Rick's last Christmas on earth.

Another first...Christmas will never be the same! Once again for me...and everyone else who really loved him. I miss Rick like crazy! I miss the little things he did every Christmas. He always made sure he would have fresh flowers or a plant sent and a love note.

We would enjoy the pleasure of watching the annual amaryllis plant grow like crazy and bloom. We have had the same bulb for years now. I can't believe I even remembered to plant it once again and it is sure growing. It is actually a fun plant as it grows inches each day. Instant gratification! Then we would always discuss beforehand what we wanted to do for Christmas for gifts for each other. He was a very very romantic kind of guy so I got some really wonderful gifts over the years from Rick.

We usually would have our Christmas get togethers with our family early in the month of December so the kids would be free to go to the other parent's gatherings. Then we would go off somewhere for a couple of days alone. This past couple of years we couldn't do that so we would enjoy Christmas Eve with the carollers coming to the door, have a fire burning in the wood stove and just spending time together. Christmas Day Jake and Val would have us over for Christmas dinner.

I don't have a stove in our suite so cooking a turkey dinner was out of the question. That was one thing Rick loved doing was making the dressing and turkey. We loved cooking together. He would always add some of the herbs that we had grown in our vegetable garden.

This year I spent Christmas Eve with Jen, Clif and family and celebrating the news of a little one coming in the new year. Christmas Day was spent with Jake and Val and the girls. We lite some candles in remebrance of Rick. The suite is just not the same without Rick. I am really trying to do more than go through the motions of Christmas. I am very aware of being the extra person around and I don't want to take away from the kids having their Christmas with their kids. They are all so good to me but I have to learn now how to adjust to these social gatherings without my husband.

I came across this poem and I can't really find the true story of who wrote it so I will list it as author unknown.

For Rick I rejoice that he no longer suffers with not being able to walk, struggling for a breath, not being able to feed himself or even being able to hug his loved ones. He is free in his spirit to experience all that God has for him...and for that I am thankful and rejoice for him.

"My First Christmas in Heaven"

I see the countless Christmas trees
Around the world below
With tiny lights, like Heaven's stars
Reflecting in the snow.

The sight is so spectacular.
Please wipe away the tear
For I am spending Christmas
With Jesus Christ this year.

I hear the many Christmas songs
That people hold so dear
but the sounds of music can't compare
With the Christmas choir up here.

I have no words to tell you,
the joy their voices bring.
For it's beyond description,
to hear the angels sing.

I know how much you miss me,
I see the pain inside your heart,
but I am not so far away,
We really aren't apart.

So be happy for me dear ones,
You know I hold you dear.
And be glad I'm spending Christmas
With Jesus Christ this year.

I sent you each a special gift,
From my heavenly home above
I sent you each a memory
Of my undying love.

After all, love is a gift more precious
Than pure gold.
It was always most important
In the stories Jesus told.

Please love and keep each other,
As my Father said to do,
For I can't count the blessings or the love
He has for each of you.

So have a Merry Christmas
And wipe away that tear.
Remember, I'm spending Christmas
With Jesus Christ this year.
Merry Christmas to everyone and special hugs to those people whose loved ones are spending Christmas with Jesus this year!

Monday, December 13, 2010

Joan here..."4 months today Ricki"


What am I doing as a widow (hate that word) four months after losing my beloved? Not much of any one thing but lots of little things.

I have been helping my mom and sisters organize our annual Christmas gathering. It has been difficult emotionally walking through it as it brings up so many memories of my past Christmases with Rick and especially of my last Christmas with Rick. Last year my family all came here as Rick was unable to go there. They brought the whole Christmas dinner and and and....lots of memories!


I just came through my first being sick without Rick. From the day he was diagnosed till now he or I never suffered from a cold or flu. So when this bug hit.....I was down for the count! Today is 6 days later and I am back on my feet! What was so incredible to me was that Rick knew I hated being alone when I am sick and we talked about when he wouldn't be here and I would be on my own. Well....it was lonely....but during this week I had numerous dreams of him. I really believe he was here for me. Not in the way I would prefer but he was here!.

Everything I do here is with so much emotion as Rick is here everywhere I look. A part of me is so fearful if I move that he won't be in my new place. That sounds so absurd I know but that is how I feel at times. There is so much comfort to me when I round the familiar bend in the highway coming into town knowing I am only a few minutes from home after being away for awhile. Will I find the same comfort if I move? Once I go...it will never be the same....I can't recreate the time, intimate moments, memories and space that Rick and I last shared together here. Is moving away from here leaving him? all kinds of questions and feelings pop up some rational and some so very not rational!

Looking back I am so thankful we had spent so many many hours together talking. Talking about him and his wishes now and in the years to come, talking about how on earth I was going to live on and how I was going to do it without him. Through our talks together there was a planting of seeds of reassurance and direction deep within my heart. We promised each other we would always be there for each other forever! ALS would not rob our love or relationship. It just would have a few new curves now. It is something that just happens deep within my heart when I need him...he is here for me! He always told me that "Joan you are the one in the whole world that really knows and understands who I am and I will always be there for you."

Today, it is 4 months since Rick has passed. Do I still cry? you betcha!!! Do I want to scream and yell? you betcha! and do I? You betcha!!! I trust God that even though it feels like it will be forever before I will see Rick again that He will make it somehow in a blink of an eye and we will be together forever once again.

I have read where I need to allow myself to acknowledge each day, month or year of your loved one's passing in your own special way. So for this 4 month milestone I chose to light a whole bunch of candles, put his picture in the middle, put a special piece he and I found in the Dominican of a man and woman kissing and completing a type of circle making them one. We had looked long and hard to find something that represented us. So it has some real special memories and meanings to Rick and I. We had found this inexpensive piece at some souvenir tienda along the ocean side and it was "us". It is such a heavy piece that I still don't know how we managed to bring it back and all in one piece.

And as our tradition, we would always have a toast. "With tears of joy my dearest Ricki that your suffering is over...and tears of deep sadness for me my love that you are no longer physically here. Keep that bench warm babe and that sea of glass clear for that dance!"

Sunday, November 21, 2010

Joan here..."Opera, Griefshare & babysitting".

I went to my very first "opera" tonight. I actually enjoyed it! It really helps that they have a reader board translating the latin and so you can follow the story line without much fuss.

My friend and I spent the day doing all kinds. It is so wierd though. I get this feeling like I need to hurry and get back home and then I stop and think..."what for?". That has been one of the strangest things to being on my own. I want to go and tell Rick everything that I saw and experienced like I used to. To think...I could stay up and out all night and who cares! That is so mind boggling for me at this point. This part of my life is unimagineable!

It has been so wonderful to have friends and family who are so supportive of me. I am so thankful for that. Until you go through something like this you will never know how much others can help you through the most difficult time of your life. I just want to make sure I will be there for them down the road as they walk through life.

Losing a spouse is like losing one half of your being. Rick and I were so very close. We talked about the day when he would no longer be here and how I was going to manage without him here. At the time we would both cry...but now I cry and feel the pain.... I was married to an incredible wonderful man.

This week I ventured out and went to a "griefshare" meeting. I ended up meeting two wonderful people, a pastor and his wife. We spent a couple of hours alone together sharing. I felt like I was sitting down with old friends that God had hand picked for this moment. They had had their own humps and bumps along the way and were honest about it. I felt like Rick was smiling and telling me once again..."see Joan...I told you...don't worry..everything is going to be all right!". My few hours spent with these two strangers renewed my faith in the ministry!

I get to look after my little grandson for a few days this next week. I am so looking forward to it. With Rick being so ill I didn't get to spent any time with him when he was first born so this will give me a chance to get to know the little man. Just him and grandma!

Taking one step and one day at a time. 3 months and 8 days.

Saturday, November 13, 2010

"It is 3 months today!"


I can hardly believe it is three months since I have seen my sweetheart! Every day is like a blur! It seems like an eternity since we have been together. I miss all those little special things each day that we shared. He couldn't do anything much towards the end but he could still talk and boy did we talk. Rick shared about his life from beginning to end, all his memories good and bad. We always laughed so much when we were alone together. He was my best friend ever!

My daughter Jen found this poem written by Constance Jenkins.

Weep not for me though I am gone
Into the gentle night
Grieve if you will, but not for long
Upon my soul's sweet flight.

There is no need for tears.
I am at peace, my soul is at rest
There is no pain, I suffer not,
For with your love I was so blessed.

I am in a place of comfort
The fear now is gone.
Put those things out of your thoughts,
In your memory I live on.

Remember not my fight for breath
Remember not the strife
Please do not dwell upon my death
But celebrate my life.

By Constance Jenkins

I miss the laughter, Rick's funny little sayings. Just hearing his voice. I hear it now but not the same. His words often say "don't worry babette...everything is going to be okay". In the midst of some of the storms in our life he would always tell me...don't worry everything is going to be okay!" I used to tell him...yeah you can say that because you aren't going to be around to deal with it anymore. He would just laugh and then would say "Well, I don't want to go, I just want to be here with you!"

I am no further ahead right now in what I am looking at doing or where I am going to live. I am just doing. Not that I want to complain as there is still so much to be thankful for. But bottom line is that I am chosing to put one foot in front of the other all the time. My feelings are pretty numb right now.

I have going through some of my computer files and came across one of the last letters Rick wrote to me and it is just so unbelievable what he wrote to me. All I did was cry reading it! I cherish each and every letter he has written that is for sure.

I have been also going through my many many picture albums of us. I can't believe how emotional that can be as each picture holds an incredible memory of our time together. We did so much during that time...wow! I am so glad for that now. We went to so many different places, met so many wonderful people, we really hit the pedal to the metal as Rick would say! I posted one of the pics I came across as I have so many memories of he and I dancing.

I am invited to a retirement supper tonight so I am going. I just don't have the "single" thing down right now. It is very stressful. I am so used to Rick and I sitting at a table and talking and being a couple. Now it is just me!

When I was in Winnpeg the last time I had a man ask me what I was doing that evening and if I would be interesting in meeting with him. Kinda like a date. I was so shocked. That threw me off...that came out of no where in my thinking. Never mind the fact that I continually look like a truck hit me... I would like to have some friends and just talk but not going out on a date that is for sure. I am just emotionally existing from day to day so anything added to that is over the top. Rick is always on my mind.

I know people meet other people and start a new life and I am so happy for them. For me it will be nearly an impossible thing. The loneliness is probably what drives people to reaching out to start another relationship. Loneliness is very real when you are used to being with someone 24/7 for years. Rick talked a lot about that to me before he died. He said he would be very jealous but he wanted me to have a life. He even talked to Jake about me having a life on his death bed and gave him specific advice, etc.

I am being very volunerable and probably stupid writing this all so I hope it is understood in the right spirit.

I have been the brunt of some pretty wicked lies told about me in the past. I have been wondering if the people who have said "God showed them such and such" ....and have said that to many people...thus spreading the untruths. Do these "in the name of God people" every go back to all the people who originally heard their lies in the name of God and admit that it actually was not God? Just a thought.

Just because people come in the name of God doesn't mean what they are doing or saying is God? Somehow, there needs to be more of a gift of discernment operating and sought after in the body of Christ before desiring any of the other gifts ie prophecy, word of knowledge etc.

The untruths spoken about another person can have a snow balling effect and when spread get more and more elaborate and outrageous in nature. So here is to seeking after a gift of discernment first! God is good! He doesn't have any other motive in HIS heart but pure LOVE! That is why when God speaks... He speaks forgiveness, redemption and love! And if that is not what you are hearing...run for your spiritual life!

Well now that I am standing on my soap box I better duck!
Here's to looking forward to eternity where we can always walk in pureness of heart! Loving and missing you Ricki!

Thursday, November 4, 2010

Joan here..."Standing tall"
































I have been sorting through some photos of Rick and I have lots of them! The last 2 yrs are all of him sitting down. Before that time they are all of him in action of some sort. Rick's dad used to tease me all the time about me and THAT camera. It used to be a joke between us. I was snapping pics all the time. I am so glad now!!! It is true...pictures are worth a thousand words! They trigger endless memories and emotions of a time and place in our life together.

Here are a few pics of the real Rick BEFORE ALS!